Portada del podcast Once Upon A Gene por Effie Parks

Once Upon A Gene

Sobre este podcast

Descripción del podcast

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Autor: Effie Parks

335
Episodios
28 min 41 sec
Duración Promedio
Inglés
Idioma

Duración Total:

160 hr 13 min

Todos los episodios

Effisode - Grocery Store Answers

22 Mar, 2022

Intro music by Scott Holmes

Duración: 4 min

A Rare Collection - Unexpected Findings

17 Mar, 2022

ONCE UPON A GENE - EPISODE 126 A Rare Collection - Unexpected Findings There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a story …

Duración: 17 min

A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd

10 Mar, 2022

ONCE UPON A GENE - EPISODE 125 A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure - Katie Lloyd Katie Lloyd is a mama to Kasper, who has a rare genetic …

Duración: 34 min

Effisode - Moments

08 Mar, 2022

Intro music by Scott Holmes

Duración: 5 min

Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere

03 Mar, 2022

ONCE UPON A GENE - EPISODE 124 Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere Jamas LaFreniere is the rad dad to Sophie, who has an ultra-rare glycogen storage …

Duración: 38 min

Effisode - The Unicorns - Random Acts of Kindness in the Rare Community

22 Feb, 2022

Intro music by Scott Holmes

Duración: 5 min

A Rare Collection - This Is Us

17 Feb, 2022

ONCE UPON A GENE - EPISODE 122 A Rare Collection - This is Us There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring people from the rare disease community, sharing a …

Duración: 22 min

How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali

10 Feb, 2022

ONCE UPON A GENE - EPISODE 121 How the Caregivers Mental Health and Physical Well-Being are Impacted Right Alongside Our Rare Disease Kiddos with Advocate and Co-Founder of Hello Sleuth - Sehreen Noor Ali Sehreen Noor Ali is the Co-Founder …

Duración: 32 min

Effisode - Bathroom Floor Moments

08 Feb, 2022

Intro music by Scott Holmes

Duración: 6 min

What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander

03 Feb, 2022

ONCE UPON A GENE - EPISODE 120 What Happens Now - Baby Boy is a Medical Miracle After Being Treated for Spinal Muscular Atrophy Type 1 with Kathryn Alexander Kathryn Alexander joins me for a part two segment to further …

Duración: 34 min